Biliary Atresia

[RoseMary6495]

Okay, so I'm 18. Female, and was born without bile ducts. I am post Kasia, and, according to my doctors, am doing oddly well with my disease. But... I know so little about it. All of the research I do is in vain, because all of it is the same information. I read about Cirrhosis, and I know that it's going to be my medical downfall, that or fat build up, which also seems to be inevitable ( all of my medicine together causes some... annoying effects )

Other Medical Problems:

- PTSD
-Depression
-Anxiety
-Anemia
-Weak bones/joints (possibly pre-arthritic symptoms)
-Post diagnosis of Gastritis
-Constipation
-Random abdominal bloating
-Jaundice
-Migraines
-Muscle problems (aches, tensing, almost always for no reason)

Thats about it, like I said prior, I dont know if some of these are due to my disease. All I know is that other defects and ailments are possible. Really, any information, other than what's overly common online, would be amazing.

Thank You,
~Rose

[deoltc]

My son is 23 post kasia, no transplant, with all the same medical issues as you, PTSD, depression, anxiety, cluster headaches, muscle spams, torn rotator cuffs on both arms for no apparent reason, bulging disc, DFD on his L4 and L5 and a small spina bifida, also for no apparent reason-he is in pain a lot of the time and I can not help but think it is all related to BA. I can not find any research either and don't know what to do. He is to the point where he is trying to get disability. He can not lift, bend over or do simple tasks like unloading a dishwasher or mow the lawn. I will keep looking for answers. If you find anything that makes those connections let me know and I will do the same.

[Dr Santos]

Hi Rose,
I understand your concern regarding this and possible complications such as infection, liver failure and irreversible cirrhosis are indeed possible. It is important that regular follow-up is done with your attending physician. Aside from support from family and friends, support from other people with the same condition may also help.  Stay positive always. Take care and do keep us posted.